The pain management clinic said that some of my symtoms didn't tie in with fibromyalgia so they refered me to neurology. When there the consultant more or less said fibromyalgia didn't exist and that they just gave a name to something they couldn't diagnose. I have also come across this at my drs practise when I saw a dr I hadn't seen before who told me just to ignore the pain and get on with it.

5 Replies

Unfortunately a lot of people get told this I was lucky although being diagnosed over 20 years ago I got fibromyalgia leaflets , meds and the address of the local support group .... My answer to people and specialists is to wave my now tattered leaflet I got all those years ago and say if it doesn't exist then why do knowledgeable gps have these leaflets.

It is sad that so many of the medical profession and aspects of health care don't keep themselves updated with current research findings. I think I read on this blog somewhere before - relying on others to help you manage your condition can sometimes be a fruitless task. It clearly does exist, and the variations in peoples symptomology doesn't mean that it doesn't exist. However, they should exclude other causes before deciding that fibro is the diagnosis. I was diagnosed by a rheumatologist - they generally have the expertise with the condition as it is considered to be in the area of auto immune disease. You could ask your Dr to refer you there. Alternatively, spending a lot of time on this website will give you some comfort to know what symptoms others describe and you recognise. If we all fitted in to the text book diagnosis we would all be robots!! As it happens we are all beautiful, unique and special individuals, and this makes the world a great place to be. Some people can't see that. Hope you find some direction from more knowledgable health care professionals. Keep trying. Best wishes xx

Hi - This is the same for me - but I agree with angelstar59, you need to arm yourself with information and be the expert, taking control and telling your GP what you want from them. Good Luck

4 years agoHidden

Try educating your GP! They do not keep up if it doesn't interest them. Change surgeries find a GP who does have an interest in FM. Some do. If all else fails contact you GP's HCT manager and complain! You deserve acknowledgement of your illness and fair unbiased treatment from you doctor.

It is hard when sat there and being told your more or less a fraud, but fibro is a real condition and not an excuse for a lazy GP to pass off on to you as he doesn't understand the condition himself. I took leaflets and posters in. I offered him a book and he took me up on it.

Doctors are human too and stressed out therefore sometimes they need a nudge. Don't take no for an answer and keep badgering them, they will not pass you over so lightly next time. Educate yourself on the condition and armed with knowledge you can engage your GP on a more enlightened level. Basically - do not give up when faced with negativity.

The internet including health unlocked site, has tons of info available, download it, print it off and go stick it under your GP's nose. It usually gets a reaction!

I spent nearly 25 years with a diagnosis of 'undiagnosed neurological syndrome', syndrome meaning a collection of symptoms, in this case nothing fit a regular condition to be diagnosed. I felt a hypochondriac to say the least, always feeling guilty for wasting their time and money but I didn't let it drop and eventually I got the entreat I deserved.

The GP who helped me most was an ex-orthopaedic surgeon, who educated himself in the conditions of FM. CFS and ME because I would not take' I don't know' for an answer. It was hard, exhausting at times,and I felt for years I was banging my head against a brick wall of ignorance and bias. I hope this helps.